Main menu

Post navigation

I’ll Meet You on the Internet: Social Media is the New Support Group

When I was young, I would roll my eyes whenever Dad began a sentence with “back in my day.” Whatever he was about to reveal was sure to be irrelevant now. Times change and one generation’s “cutting edge” becomes passé to the next. And now, when I reflect on my early life with MS, I find myself sounding just like my dad.

Back in my day, when I was diagnosed in 1999, I didn’t have a computer, let alone internet. If I wanted to find out about my condition, I had to go to see my neurologist. Who else had the answers? There was no Google to ask, no “Web MD” to consult about symptoms.

Back in my day, if you wanted to connect, you went to a real support group and talked to one another face to face. We weren’t sitting in front of glowing screens connected to typewriters, pouring our souls out to faceless strangers. I would have laughed at such a prediction much the same way my grandparents would have reacted to the concept of television.

With every new iPhone release or tablet launch, technology is evolving, redefining our relationships and how we interact. In a way, I am melancholy for a time when “social” meant playing board games or telling stories round the campfire. Not to worry, though, no doubt there’s an app for that.

But then I consider how the internet has empowered the chronically ill, and technology is easily forgiven for its domineering takeover of everyday life. Housebound no longer means isolated. Loneliness is banished by the wi-fi connection.

From blog posts like this, to message boards, to Twitter and Facebook, we are all interwoven now, able to instantly respond to what we read or see. We exchange ideas, comfort each other, help each other find answers, soothed by the reminder that we don’t battle this disease alone.

From the time I blogged my clinical trial back in 2007, I saw firsthand how my words, launched into cyberspace, connected me to others: a pure and unbridled connection of thoughts. They weren’t clouded by self-conscious worries of how others might perceive me. And let’s face it, who doesn’t love going out of the house “virtually,” not having to worry if your clothes match or hair is brushed?

In fact, I’m sitting here in my bathrobe at 4 a.m. writing this blog post, connecting with you on my terms, at my time. It works both ways since you are reading this at your convenience, on your terms — and maybe in your jammies, too. The freedom and control is undeniable.

No matter if you are a ballerina who can stand en pointe or your soul does a dance from a chair … we can all fly free here, expressing ourselves online.

For a time, I thought my internet MS social circle was all I needed for support. Then I had an opportunity to be a patient speaker for Novartis, sharing my Gilenya experience with others. Interacting with group after group of MSers around the country, I was honored to meet new people, all so different from me, yet we all have MS as a common denominator.

That face-to-face connection allowed me to hear the inflection in their voices, read the emotion in their eyes–something the internet has yet to replace.

I am no longer a speaker for the drug, but I was so moved by that experience that I started a support group in my county. I was hoping to bring that personal connection to those in my community who are living with MS. So, I have come full circle and realize interacting in person is still an important piece of the social puzzle. Nothing can take the place of a real hug from someone else who “gets it”. No amount of emoticons can compare.

But when you live in the sticks, or your condition makes it hard to get out, the MSers of today have something we didn’t have–back in my day–people who know exactly what you’re going through and they’re only a keyboard away. The internet is full of support.

Sometimes I wonder what Dad would think of us connecting on the internet. I’m fairly certain that if he began his reply with “Back in my day” it would probably end with “I couldn’t have imagined anything as empowering as this.”

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Good to read other people’s problems! I feel more connected to the human race! I am older and at times I get very confused as to what is in my head and what is real. I don’t know anyone else with MS, NOW I DO. THANKS